Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Wednesday, June 10, 2015

What's going on in Bokatopia??

I know you're all wondering (other than a fantastic cruise to Alaska) what's been going on in the wonderful world of Bokatopia? (credit for the name goes to our marriage mentors Lindsay and Joe!)

I've held off being specific about what has been going on health-wise for a couple reason. First, I didn't want to sound like a broken record. I've had some good moments and some bad ones. Like I said...broken record =P But seriously, things are going...just going. I've had some days where I feel good, and I do feel like overall things are improving. I started a new medication a week or so before we left on the cruise, and I may be seeing some benefit from that. It's still a bit soon to tell, but the cruise was great, and I have had more ups than downs lately. Although the downs that I've had have been pretty rough. I think it's only been 1 ER trip in the past month, though, which is great! Going on 2 weeks with no "date nights" so here's to going on three!

The second reason I've held off a health update is because sometimes it just gets hard to live with stuff every day and then re-live it again by writing blog posts. Since school is out for the summer, I'm doing some work with my mom on her travel business and working on my dissertation. I spend a lot of time alone. Just me, Bonk, and my mast cells...The days I feel good are productive and I'm able to run errands and feel somewhat "normal." The days I don't feel well I spend in the bathroom or the back bedroom and barely make it out of the apartment to take Bonk for walks. Last week I didn't leave our apartment for 3 days straight because I was feeling so sick. It's hard to be alone with my thoughts and feeling sick day after day and sometimes I just don't want to think about it again to re-tell it on here.

So that's what's been going on, and here's a bit of what's coming up!

Next week my mom and I will be going on a ROADTRIP!!! Yay...I think we calculated it out that my mom will be traveling over 2200 miles from Monday-Saturday since she has to drive to Ohio first...so excited...Why might we be taking on such a crazy endeavor you might ask?? I wish I had some exciting news of a wonderful new travel destination that we were going to check out (although for any of your travel needs, check out www.TrippinwithJamie.com), but I don't.

We are going for my 6 month follow-up with Dr. Afrin, my mast cell specialist, in Minnesota. I'm both glad this appointment is here and also a bit disappointed. Obviously I've had a rough year, so going back out to ask some questions get answers from him in person instead of communicating via email and phone hopefully will be beneficial. The disappointment comes because I was hoping to be in a better spot now than I am. When we got the diagnosis in January, I knew it wouldn't be a quick fix, but I also think I expected that by the time June rolled around, it would be a "healthy check-up" instead of a "sick visit" when we went back out to Minnesota.

We are leaving Ohio on Tuesday, and my appointment is Wednesday afternoon. After taking a detour to visit my aunt in Wisconsin and friend outside Chicago, we will be back on Friday. Please keep our travels in your prayers that we will have a safe trip out and back. Also, please be praying that Dr. Afrin will be able to cast some light on some of my ongoing issues and answer the questions that we are really hoping to have answered.

Also please be praying that Nick and Bonk don't suffer too much separation anxiety while I'm gone. If only I could leave my mast cells somewhere and drive away...